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Am getting recurrent shingles and no idea what the cause is - fed up!

Posted , 20 users are following.

Itchy2017
Itchy2017

Hi there, I'm a 27 year old female and am on my 4th shingles outbreak in just over 13 months. I am feeling quite low about this and frankly very fed up. I am looking for some advice on how to understand what my potential triggers are, coping strategies, ways in which to prevent further outbreaks and anything else you think could possibly help me, thank you. I'll now give you the history.

I had my first bout of shingles just over a year ago. It appeared on the upper half of my left buttock and tracked horizontally outwards to the distal side of my buttock. At first I thought it was a midgey bite but when the rash began to spread I knew something was wrong. I looked it up online (as you do) and was presented with three possibilites; impetigo, genital herpes or shingles.

I went to the GP who diagnosed shingles. Presentation was inconsistent with impetigo and genital herpes, especially as it was unilateral, localised, tracking a nerve and I have never had herpes 'down there'. It was after the 72 hour period to be able to effectively take antivirals, so I had to wait it out.

Approximately 3-4 months later I had another outbrek. Exacly the same presentation and symptoms. I think this was triggered by sunlight as I'd been sunbathing in my friends (secluded) garden with a thong on - oops. Went to GP who said that shingles categorically can not appear in the same place twice, and that this was likely a herpes infection of the skin. I was confused and asked, 'so like cold sores, or genital herpes?' He said neither, and that although it is rare, it is possible to get herpes infections of the skin. He prescribed me antivirals and gave me a swab to use if I ever had another outbreak.

6 months later and along came another episode in the same spot. I saw yet another GP who diagnosed shingles again. I asked him about the reoccurring in the same place conundrum, and he said that it can happen as it's the nerve that it's stored in and follows the same path, that it can spread but will usually follow the same path; much like cold sores. He gave me antivirals.

Now, almost 4 months later here I am again. Exact same spot again, albeit slight to the right. First cluster appeared more proximal to my buttock crack (sorry, for want of a better word/phrase). As it has been the bank holiday I phoned 111 and was prescribed antivirals again. This time however, they do not seem to be working as well. I have been on them for a little over 48 hours and usually they will have slowed down and will be calming. Throughout today a second cluster has appeared, following the nerve as before. Also, this outbreak is much more itchy than previous ones.

I wasn't particularly worried about this until the 111 GP sounded concerned and asked if this was being investigated. The answer to that is no. I have done some reading and seen that a poor immune system can be to blame, but I have a pretty average immune system. I'm not on chemo and I had my annual STD test last year just before all this started which included a test for HIV and all came back negative. I do have B12 Deficiency but am having 3 monthly injections for it so not sure if that's anything to do with it?

Over these episodes I am beginning to form a picture of when I'm about to have an outbreak and am quick to act on it now. The hardest and not always most identifiable sign is tiredness about a week before. As I said I'm B12 deficient and am a university student so can become fatigued quickly, so usually assume that this is why I'm tired. Then the day before an outbreak I have a very tender left labia (feelsa like someone has kicked me in the crotch) and a swollen gland in my left groin. Tender where your bottom meets your top of the back of the leg and a really tender spot on my buttock precisely underneath where the rash appears - no generalised tenderness, just right over that exact spot. Then the itching creeps in and then the rash. Afterwards is when I realise that must be why I was so tired. Usually the rash is not painful at all and only slightly itchy. This time it has been very very itchy indeed. Still no pain but ruddy itchy!

I have not managed to use the swab from the previous GP as I have always managed to get antivirals in time and I don't realy fancy deliberately popping a blister to get a swab - I imagine that would hurt like no-one's business!!!

Today one of my friends basically said I was too young to have shingles, have had suspiciously too many outbreaks and basically made me feel like a leper and it was somehow my fault. Does anyone have any advice, hints and tips or words of comfort for me? I am well and truly fed up and feel so down cry

Thank you xxxx

3 likes, 38 replies

38 Replies

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  • kimberly53217
    kimberly53217 Itchy2017

    Edited

    I am so sorry that you are dealing with these recurrent outbreaks. You are not alone. First, I will say that most physicians do not educate themselves enough about the virus. With that being said - you are in the right place. It is up to us to be our own patient advocate. Yes! You can have recurrent outbreaks on the same nerve. I have had those for many years. I suggest finding a physician who will prescribe a maintainance dose of antiviral medication that you take daily. While you still may have outbreaks, those will be less frequent and less intense. I take Valtrex 500 Mgs twice daily. There is also famcyclovir and acyclovir. Acyclovir does not work for me. My outbreaks are on my face. I have had it in my mouth, nose, ear, eye, and my brain - which was nearly fatal. Shingles can be dangerous, dependent upon where it attacks you. As for why does it attack you? Who really knows. I too have a B12 deficiency. Another reader here suggested that my irritable bowel syndrome could be the culprit. It could be genetic for me, as my mother and brother both have the same thing. For the shingles pain, I am prescribed gabapentin (Neurotin) which works on nerve pain. No amount of narcotics or NSAIDS will work, as these do not touch nerve pain. Many people will incorrectly assume that this is a disease of "old people" and lay persons will tell you all sorts of ignorant things. Just ignore those people. Until you have had it - you cannot intelligently converse about it. I am a registered nurse, and after having it in my brain, I have read numerous research articles and spoke with top experts in the subject here in the States. Even they will tell you - you know your own body. Find a physician who respects that, and is knowledgeable about the disease. I suggest following up with an Infectious Disease specialist. They are USUALLY equipped to understand the virus, take cultures if necessary, and correctly prescribe maintenance therapy. The only downside to this is that it is often hard to get an appointment, and getting in while you have a flare-up might be difficult. Good luck to you. Hope this helps. - Kim

    • adrianab
      adrianab kimberly53217

      Posted

      What were symptoms you had for face and eye? I recently started having twitching in my right eye and I'm a little paranoid. Twitching has been going on for a week now. I have bumps on my scalp on right side only.

  • Merry19451
    Merry19451 Itchy2017

    Posted

    Hi Itchy!

    I am sorry you are going through this process with Herpes Zoster Shingles.

    I would definitely recommend popping a vesicle to get a swab for a PCR. It is the most definitive test to determine whether or not it is indeed Herpes Zoster Shingles.

    I would ask for the antiviral Famciclovir, first, or Valcyclovir, second, rather than Acyclovir, as the first two are more efficacious than Acyclovir.

    Please Google Herpes and follow high Lysine low Arginine diet. It truly does make a difference in the foods that you eat.

    Please get plenty of rest and sleep. Try not to overdo it. Avoid sunlight as that is a definite trigger for Herpes.

    Try to avoid stress, if you can.

    I am a Nurse Practitioner in the States and have had Herpes Zoster Shingles in my right ear every three to five weeks for the past twentyone years and twice in my right eye. I understand your frustration.

    Best Wishes

    Merry Juliana

  • canned_peaches
    canned_peaches Itchy2017

    Posted

    Hello, Itchy. Yesterday I broke out with the usual cluster on the usual place...for the fifth time in two years. I actually had one break out on the other side, but it was minor and I really don't count it. 

    I don't know why I act surprised every time this thing hits me. It's not as if I don't have warning: the aching back, the loss of balance and unexplained bad mood. But I am always thrown off guard by these terrible shingles!

    I've decided to try changing my diet completely. As far as the stress component, I'm not sure how to fight that. I think I'll just power through and hope to get well quickly. That's the crazy thing about these shingles -- you never know how long they'll visit.

    So, the only words of comfort I can give you are you are not alone (I thought I was the only person who suffered recurrent outbreaks). 

    Andrea

    • Merry19451
      Merry19451 canned_peaches

      Posted

      Hi Andrea,

      You certainly are not alone regarding recurrent episodes of Herpes Zoster Shingles. I have recurrent episodes of Herpes Zoster Shingles in my right ear every three to five weeks for the past twentyone years and twice in my right eye.

      Please Google Herpes and follow high Lysine low Arginine diet. It has helped me by decreasing the frequency of the episodes and the severity of the pain. Some take Lysine supplements, but I prefer to just follow the diet.

      I have insomnia and also have ataxia, or become off balance, preceding and during the episodes. Where is your rash?

      What most of us who have recurrent episodes of Herpes Zoster Shingles have found is that if you try to power through the episodes without resting and sleeping more, you will have more recurrent episodes as you are stressing your body out.

      Best Wishes

      Merry Juliana

  • dawn30139
    dawn30139 Itchy2017

    Posted

    Hi Itchy2017,

       Just wondering if you are still dealing with shingles? I had them about 4 years ago on my left side half way around my body & used some nutrition a friend told me about. I got over the intense inner pain in 4 days & the sensitive sore pain on the skin in about 2 weeks & they haven't come back! Believe me I would not want them back. If you are interested you can read about the products at [url=http://www.weluv.relivinglife.com]www.weluv.relivinglife.com And if you want to know what I took you can email me from that website as well. That goes for anyone who is struggling. This "shingle survivor" wants to help those who are hurting & give hope. Even as I was helped & given hope!      

       Passing the hope along!

       dawn30139  

  • dawn30139
    dawn30139 Itchy2017

    Posted

    Hi Itchy,

       Wondering if you are still dealing with shingles? I had shingles about 4 years ago on my left side half way around my body. I was able to get rid of the intense internal pain in 4 days & the sensitive pain on my sores in about 2 weeks. I have no scaring. They haven't come back. Would live to give you hope like I was given. Let me know if you are interested.

       Passing hope along, dawn30139

  • sean83209
    sean83209 Itchy2017

    Posted

    I Read your post And was puzzled myself at how many times you’ve been through this. First let me start by saying I am not a medical doctor so anything I say is just from experience and my opinion. Although it is very uncommon you can most certainly contract shingles if you’ve already had the chicken pox. Usually it’s commonin people in there late 50’s and up. The one thing that really puzzled me was when you said there was no pain. Unfortunately I’m going through a bout with shingles right now and I have to tell you it is one of the most painful things I have gone through. And after 7 yrs in the SEAL Teams I can tell you I have a very high pain tolerance. When you had the rash outbreak was it followed with blisters ? And by chance if you had the blisters did they go through the scabbing stage ? They started me on a medication called Valtrex and I was already in the blistering stage (3-5) days in and the Valtrex started working on the second day I was on. The other thing they say is it is very rare to get them a second time and even more rare a third time and you had already been through it four which is crazy and believe me when I tell you I feel for you this stuff sucks. Anyway I know your post is 10 months out but I’m really curious what the end result was. Did they finally contain what you had ? Did you in fact have the Shingles ? If so I hope you had a speedy recovery. Thanks for your post btw it was educating to me. Take care and God Speed ....

    S.T.  O’Brien

    • helen11671
      helen11671 sean83209

      Posted

      Hi Sean. Just to jump in here. I am 52 years old and I’ve had recurring shingles since my early 20s. Usually twice a year. As I’ve got older the pain has become almost non existent and I only know it’s there when I bath or shower and I feel the rash. I get it on my right butt cheek. A doctor told me you have to take anti virals BEFORE the rash breaks out or they have no effect. Is also a virus that lies dormant in the nerve endings and can reactivate although reason why isn’t known. So yes it can and does recurr many times. Believe me I’ve looked extensively into this. Now I put a compeed plaster on the rash and take l-lyseine daily. Hope this helps. No I’m not a doctor either this is just my own experience 
    • Merry19451
      Merry19451 sean83209

      Posted

      Dear Sean,

      I am sorry for your suffering. Herpes Zoster-Shingles can be one of the most painful afflictions of mankind. You can have recurrent Shingles. Many of us on this forum get it, due to impaired immunity.

      They tested me and it was indeed Shingles. I frankly found it far worse than childbirth and passing kidney stones.

      I have gotten Shingles in my ear every 3-5 weeks for the past 21 years and an twice in my eye.

      Best regards

      Merry Juliana

  • Also_itchy_1
    Also_itchy_1 Itchy2017

    Posted

    OMG! My rash is in the same pattern. I have had this for at least 12 yrs. I just tried apple cider vinegar as a pain reliever. I apply it directly to the rash. It works on pain and itch for me. Today I began using L-lysine 1000 mg twice daily. I am currently having a breakout hope it helps. It's terrible having this itching sensation on your buttocks. I totally empathize with everyone who suffers from this. I'm also going to take vitamin B daily. I hope this helps and reduces or eradicates my outbreaks.

  • briggie_86
    briggie_86 Itchy2017

    Posted

    Hiii, I'm so happy I am ready this, I mean shingles is nothing to be excited about. I too get it all the time, same spot since the early 90s. I will be 50 so0n. And I have a episode, is what I call it now. I get a big blister in the middle of my forehead. Same spot forever... once in my arm.. so small, that after that time I thought it was gone for good. But nope laid there waiting for 4 years and boom. This is a episode from now has almost 2 years in between . When I was younger I would have it 2x a year .. even when I became pregnant I got it. It's frustrating. I've done everything.. even some yoga.. I do b12 n lysine. Now they say to get the shot since I will be 50... noooo both are not 100 % and ppl have died n had complications. That worries me, since it lies in the nerves in my head... so I try to stay away from processed food. Caffeine is a big no during a outbreak. But I have to have a coffee.. also sleep is #1... you have to rest your body. Some Dr will say stress is a trigger, some say no. I say yes... it is . And some Dr. Have no clue about shingles which is herpes... It's treated the same.. I did read that if I was exposed to the chicken pox that it may help to not have further outbreaks instead of a getting a vaccine. Don't know if it will help. But to not have the vaccine... which scares the crap out me. Plus it is expensive. Someone suggested marijuana also but not sure about that. Haha. I hope this helps, oatmeal baths are great.. hot soaked teabag is good for the blisters.. potatos.. raw. Don't ask i have tried it all.. cortisone cream can make it worse. Ice helps for itch.. the list goes on.. good luck to us all

    ??

  • Jadefish7
    Jadefish7 Itchy2017

    Posted

    I am recovering from shingles, or I thought I was, after 7 weeks of misery. Now I am so tired I can hardly function and I am getting really horrible shooting pains in my chest and back area. They make me gasp out loud and come out of the blue. I've had my heart and lungs checked within the last two months. All clear.

    What is going on? I am scared that I am going to have another bout of shingles.

  • kath99865
    kath99865 Itchy2017

    Posted

    Hi I am now on my fifth outbreak of shingles near the base of my spine all within a couple of centimetres of each other and have had post neuropathic nerve pain since the first time I too have had treatment for the last four times I am sick to death of this as I feel its taking over my life.
  • gillianriom
    gillianriom Itchy2017

    Posted

    Hello everybody with Shingles problems

    I have got shingles for the first time this weekend

    So painful and itchy too and frightening

    I live in France and here we have what they call a 'fire charmer'

    People use them when they are burnt and some of these people also charm the fire when you have shingles, known as zona here in France

    I went to see one Monday, she blew on me, it felt like a North Wind, wonderful and after a lot of the burning, not all faded

    These people continue to work over the next few days

    no idea how it works but even my chemist told me to find a fire charmer

    they take the heat out of the body and start the shingles healing

    One of the main problems for me is the itching, drive you mad itchiness all day, cannot concentrate, sleep or do anything

    I have been trying bicarbonate of soda mixed with water to form a paste.  It relieves your symptoms for a short while, leave on for 15 minutes then have a cool shower, but dont rub with a towel after, just pat dry

    It will give you about half an hour relief which is better than no relief

    You can do it as often as you want

    Also i have changed my diet a bit

    eating bananas, green veg, fish and chicken

    and tons of water

    i heard pineapple is very good, so gonna get some today

    plus cold compresses as often as  you want

    When this clears up i am definitely going to be vaccinated, could never go through this again.

    So try to find someone who charms the fire if you can.  If you ask around someone normally knows someone

    Good luck

     

    • kath99865
      kath99865 gillianriom

      Posted

      Hi Gillian thanks for your reply I too was going to get the injection but you have to be free of all symptoms for a year before you can get the injection and as I've had five lots god only knows if I will ever be clear for a year. Kath

    • launak
      launak kath99865

      Posted

      Hi Kath, I just visited my dr. and we talked about getting the new shingles shot.  She didn't mention anything about waiting so long after an outbreak to get the shot.  I just looked on the CDC website and found this info - 

      "There is no specific length of time that you need to wait after having shingles before you can receive Shingrix, but generally you should make sure the shingles rash has gone away before getting vaccinated."

      I'm grateful for this site to share ideas and it's helpful to know there are others who have recurring issues like myself - it sometimes feels overwhelming.

    • Merry19451
      Merry19451 kath99865

      Posted

      Hi Kath,

      While you should not have Shingrex while having an active episode of shingles, you do not have to wait a specific length of time after your last episode.

      Some of us would never get the immunization!

      Merry Juliana

    • kath99865
      kath99865 launak

      Posted

      Thank you for reply this was the information given to me from the private clinic as in the UK you can only have tge inoculation at tge age of seventy I will get in touch again Kath
    • kath99865
      kath99865 Merry19451

      Posted

      Hi Merry I will get back in touch with the clinic as this wasn't the information I was given Regards Kath

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